What is the Answer to the Sheltered Workshop Question?

The Answer may surprise you

Sheltered Workshops are currently labeled in broad strokes as either saviors to families or exploitative to the disabled. Changes are coming that will affect people using these services and the headlines from around the world include, “disaster for people with disabilities,”parents fight closure,” and “persons with disabilities exploited.”

So what is The Answer?

About one year ago when the sheltered workshop discussion hit my radar, my gut reaction was “Protect the Programs!” It was an opposite reaction to many other people who I respect in my circle of on-line advocates. The battle cry of most others within my vision (on-line) called out for No Use for Sheltered Workshops and Clear exploitation of Human Rights.

I expressed my opposing view to each of them personally. However, because I have had only positive personal experiences with the workshop model ( having seen effective workshops and know personally the families that utilize sheltered workshop programs) I have been strangely silent on my own platforms. The fact is, well, I’ve been looking for more facts. Or at least experts. I’ve felt both too close and too outside of this issue to create effective arguments. (Also, in Nebraska, the changes are all moving under the current, still.)

OK — so back to The Answer. Well, although I have shared my opinion in Part One as to Why Sheltered Workshops Work and part Two as to What Forces People Into Sheltered Workshops, I’m here today to say, The Answer starts with you. My role, as an advocate, is to bang the kettles, ask the questions, and prod You to help create the right answers (plural being another key).

The Center for Medicare and Medicaid Services, “Final Rule Medicaid HCBS” is full of positive, person-centric language and encourages the most integrated environments.

Starting with a Public Comment Period

The first thing you need to know from this document is that every state is required to have a “Public Comment Period.” Nebraska, for example, has not yet legislated most of the changes certain to come, so what you need to know right now is this:

The problem with a public comment period is this: getting the comments.

I learned a new word the other day, atomized. I should say, I learned a new usage of the word atomized. In our current media/information overload and distribution formats, any new piece of information is atomized. With so many avenues for people to get information, unless the “public notices” are put in the exact two places you look at everyday — you’re never going to know. (This is why I’ve chosen Medium to share this article, as an example, in the hopes of reaching a broader audience.)

Earlier in this CMS document it suggested that there were over 200 public comments considered in the preparing of the proposal. Now let’s consider that there are more than 450,000 people in sheltered workshop environments alone, and this does not count those who will be affected by the housing portion of the changes or the vocational transition portions. 200 families does not sound like a very comprehensive sampling to me. But I’m not surprised because, well, as a parent and advocate I didn’t know this was even a subject up for discussion at that time. And, at the time of the national report, my son was in a transition program.

Here’s the other deal, I’ll admit to a certain amount of cynicism about the process. When I learned from one of the local providers that they expect there will be a comment period I immediately thought of this clip. Take a two minute break and see if you feel our governmental agencies ever work along these lines?

http://www.youtube.com/watch?v=HNmIQX_ImgM

That said — Go into the cellar people!

Watch for the alert that there is a “comment time” and raise your voice. To be fair our news/media/attention is so individualized that we (you) have to do the work to know when to speak up and what questions the change-makers want answered.

Also, it’s up to you to remind the change makers as to what the questions even are. For example, if there is a challenge that you fear may be unique to your family and not worth mentioning — mention it! You never know, this may actually be an issue that others across the state are facing and if no one is talking about it, then that challenge will not be addressed.

Who do you want giving input and making these decisions?

I have made some broad assumptions, I admit, about the decision making processes in several states. I feel like “well-intentions” drive people to make decisions based on their values and perceptions and prevent the people directly affected and their values and realities from getting the truth heard.

You can check the status of your state’s changes on The HCBS Advocacy: Information for advocates about the new home and community-based services rules website.

For example about Nebraska: “Nebraska has no waivers expiring before March 17, 2015. However, the state is working on amendments to several waivers serving people with developmental disabilities. When those amendments are submitted, the state must include a transition plan for services offered in those waivers. They will then have 120 days to submit a transition plan for the rest of the HCBS system.”

There is an ongoing list of the Key Dates and Deadlines on the right hand side of this website. Check in and see where your state is on the process.

Who should be involved in the comment session?

  1. Self-advocates and families that are already within the affected programs.
  2. Self-advocates and families who may someday be included in the affected programs.
  3. Businesses and Community affiliates who currently work with people who are disabled or may in the future work with people who are disabled.

That about covers it, right? Keep in mind, the “comment session” is only one key to The Answer. This is not the only time you should talk.

Even if you have missed the comment period in your state, you should still be talking right now to:

  1. The service providers. If you are working with a workshop now or want to have that option in the future, tell the service providers themselves what you need, what are your concerns, what changes you’d like to see and also what changes frighten you. In most cases, they are already working together within the community and with government officials, so let them know your position.
  2. Voc Rehab groups and professionals. It looks to me that more responsibilities will be falling on their shoulders and they need to hear from the community what are the needs and challenges of the differently abled community they serve and will be serving. And,
  3. Talk to your local lawmakers. For example, in Nebraska, the state legislature is already listening to families and service providers and you can and should add your voice to their process anytime. (Nebraskans: Find your state legislature here.)

The service providers I have spoken are trying to encourage self-advocates and their families to 1) Stay educated, 2) Communicate concerns and issues and 3) Don’t panic.

So thank you for joining me on this rant. In Part One I shared “Why Sheltered Workshops Work,” in Part two, “What Forces People Into Sheltered Workshops” and here I hope you have learned that The Answer to the Sheltered Workshop Question is YOU.